T1 Talk: Back To The Beginning

Today’s post begins a series of conversations between myself and Bec of Sweet and Sour Diabetes. We first connected through our blogs, and our mutual friend type 1 diabetes. Despite our three year age difference, we have discovered that we both have quite a lot in common. Starting with the fact that we were both diagnosed with type 1 diabetes in May 2010, only a couple of days apart. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. Although this is our own unique series of T1 Talks, we would like to give credit to Laddie and Kate for the inspiration from their Type 1/Type 2 Conversationsseries.

Our first T1 Talk is titled Back to the Beginning. This isn’t your typical diagnosis story. We aren’t specifically revisiting diagnosis, DKA, or the signs and symptoms of type 1. I guess we’re focussing more on the people who were dealing with a type 1 diagnosis thrown into their lives, and some of the issues they faced.

There are two parts to this T1 Talk. The first half is right here in this blog post. The second half follows over on Bec’s blog, so make sure you head on over once you’re finished here.

Tell us a little about yourself

Frank: I’m Frank from Perth, the most boring city in Western Australia the world. My first foray into the diabetes community was when I began writing my blog Type 1 Writes in 2015, and diabetes has become my passion ever since. Some relatively uninteresting things about me: I’ve been a university graduate for four years. I have a degree in Marketing and Public Relations, but the job market in Australia is a tough one to crack. I hate exercise, but somehow I ended up working in a Warehouse. I love drinking coffee, and I would happily eat Toast at any time of the day. I prefer TV shows over movies. I like music from Good Charlotte and The Fray. My most frequently used word would be “honestly.”

Bec: I’m Bec from Sydney, Australia. For the past few years I’ve been part of the diabetes online community through my blog Sweet and Sour, and now as a reasonably regular contributor to OzDOC on twitter. Outside of my online diabetes life I am a student speech pathologist commencing my final year of study. I’m a pianist, 80’s music and film connoisseur, Harry Potter enthusiast, and TV series binge watcher. I also enjoy reminding Frank of Sydney’s superiority based solely on our fancy coat hanger. I do approve of your music choice Frank, so you’ve got that going for you.

Frank: You’re so lucky. You can just climb the bridge or walk over and have a Cannoli at Rossini’s on the Harbour whenever you feel like it!

Bec: I still haven’t climbed that thing! One day. When I’m no longer a poor uni student.

Frank: You haven’t climbed it? I’ve done it twice and I don’t even live there…

How did you first connect with each other?

Frank: I remember leaving a comment on Bec’s blog on the final day of Diabetes Blog Week in 2015. Most of the blogs I had read at the time were from the US and abroad, so obviously the first thing I noticed was that she was an Aussie! Over the year she left a few comments on my blog, and eventually sent me an e-mail. I’m still not sure whether my reply actually went through, because I later discovered that my outgoing messages weren’t reaching their recipients. I think we connected a lot more once we became Facebook friends, and Bec began joining in weekly OzDOC chats on Twitter (you’re welcome).

Bec: Thankfully I wasn’t shunned by Frank’s dodgy email account; your reply did work. I have no idea when I found Frank’s blog but I’m going to say it was probably around the same time. I had the same response “Look! Another Aussie in the DOC!”. Plus he had a cool graphic/logo for his blog so looked ultra-professional. I became a regular reader/blog stalker and we had a comment exchange happening across our posts. I like to think we’ve become friends over the years. You can be smug about getting me into OzDOC, but I think the real privilege is having access to my bad jokes/film references/cat gifs on a regular basis. You’re welcome.

Tell us a little about what was happening in your life when you were diagnosed?

Frank: I’m one of the privileged few who got to join the diagnosed-a-few-weeks-before-turning-18 club. I was in the midst of a big transitional change in my life. I had newfound independence. I was midway into my first semester at uni, enthusiastically working my first real job, and had only recently gotten my license. It was very “different” to going to school, having the same routine and seeing the same people every day. I also remember spending a lot of time in front of the computer working on uni assignments, which are very different to high school ones! I’m not one of those people who can simply belt out an essay the night before it’s due.

Bec: I can’t imagine being diagnosed at that time. That’s a major transition stage to have T1 thrown in the mix. I was 14 when I was diagnosed in Year 9 at school. The most exciting thing going for me was being a week from getting my braces off. I remember it being a stressful time. I still have my school diary from 2010 and it listed a lot of half-yearly exams and assignments due shortly after my diagnosis. I was busy at school, taking piano lessons, choir, and going to weekly Scout meetings. Quite a bit for a 14-year-old.

Frank: Well, you had to deal with that while you were in High School. And you were doing a lot more than I was at 14. When I think about the amount of time I spent on Homework and exam study, I couldn’t imagine having to deal with type 1 on top of it. Although, it would have been a good excuse to get out of Phys Ed class…

Frank: Your stalking obviously worked, because we’re now diabuddies. But I think the real privilege is being in the circle of cool kids with a Twitter account. You’re welcome.

How much did you know about diabetes prior to being diagnosed?

Frank: I always thought diabetes was caused by being unhealthy. Poor diet, lack of exercise, blah blah blah. I couldn’t distinguish between types, either. I recall the type 1 in my Primary School writing about having to give herself needles in the annual school newspaper. I simply cringed at this thought, and suddenly felt very conscious about the junk food I was eating after school. Meanwhile the type 1 in my High School came as a total shock. He played heaps of sport. I remember he had an insulin pump, and often told our Maths teacher that he had to leave to get some sugar. I think he was just wanted to get out of class…

Bec: Haha dodgy type 1 excuses. I don’t know how he did it, I felt guilty for using it to get out of sport once!

I knew precious little too. I saw 1 person with type 1 in primary school and all I knew was that she could eat jellybeans in class sometimes and had injections. Back then I split type 1 and type 2 into “the needle type” and “the food type”. The morning I was taken to hospital I kept asking my Mum whether I had “the needle type”. She (not knowing anything about it either) believed I didn’t. Woops…

She raided our cupboards that morning throwing out junk food because she didn’t know what else to do. I remember mourning the Milo (thankfully I got it back once we realised excess Milo consumption did not cause my diabetes or anyone else’s for that matter).

Frank: Your Mum throwing away the Milo…hahaha! Seems like you had a greater insight into diabetes than I did. I never genuinely considered what having diabetes meant, or what those people in school had to do to manage.

Bec: She was on a mission! I didn’t consider what they had to manage in any way. I look back and wonder if I said something stupid at some point as a kid. Probably not, was a bit of a wallflower.

How did you react to learning that you had diabetes?

Frank: When I learned I had diabetes in the midst of DKA, I was devastated. I thought I had done something wrong. I asked my Dad if I would have it forever.

I’m usually more of a glass half empty kind of person. But post DKA, I was so relieved to have saliva back in my mouth and my energy back, that I wasn’t really pissed off about having diabetes at all! The extra attention in the beginning was kind of nice, too…

I remember telling people that once my diabetes was controlled, I wouldn’t have to check my blood sugar so often. Ha ha ha!

Bec: The feeling of having done something wrong is a hard one, I’m glad you got through that. I remember that feeling of not being thirsty anymore. It was the greatest thing ever.

I love the blood checking hypothesis. If only!

By all appearances I handled it remarkably well. I was very attentive and wanted to understand everything about it. I felt a little relieved that I could name what was happening to me.

A few days post diagnosis I remember going into my parent’s room one evening and asking them “why me?” Other than that, I was firmly denying any emotion about it because I was too busy learning how to live with it. In hindsight, that’s not the best way to go about it, and it was followed by a pretty deep denial. Oddly, despite the denial, I was an “over-manager”. I just held on to the idea that it was temporary/an inaccurate diagnosis for a good year or so. Almost 7 years on and I’m only recently starting to properly react to it, and that’s okay.

Frank: I’m so touched hearing your “why me” story. I’m instantly reminded of our age difference, and I can’t imagine how you must have felt dealing with it 3 years earlier than I did. Also, you’re not alone. Seven years in and I’ve only just started to actively manage it in the past year.

Bec: Now now, you’re not that much older thank you. But yes, at the time of diagnosis we were definitely in different stages. I was still more naïve kid than adult. I guess that changed pretty fast once I was diagnosed. You took more ownership of it by asking what you had done wrong. Nothing, of course.

What were you told by your healthcare professionals when you were diagnosed?

Frank: That I would be able to live a normal life. Which my parents constantly reinforced to me whenever I made a comment about having a leg chopped off. There’ll definitely be a cure in your lifetime, my Dad constantly remarked.

My first diabetes educator was amazing. She pulled out her famous diagram of the mouth, and the path that food takes when it enters the body and is eventually transformed into glucose to supply the body with energy (I hope I got that right, G). She remarked that I was quite a spontaneous eater, and suggested that most people have a cycle of 10-15 meals that they eat to help better take note of insulin needs. Mum and I still laugh about that idea to this very day…

Unfortunately, I also had an encounter with an endo who told me I had very poor control just months after being diagnosed. Said educator went in and stuck up for me, and made sure that I was never scheduled to see him again on a clinic day. Thanks, G.

Bec: Oh I get in so much trouble for the dark humour/sarcasm, but I’m glad you’ve been supported by your family and G. G is an absolute legend and that endo needed to read their file notes a little more carefully.

My diagnosis confused me at first because it took a while for someone to tell me what it was. An endocrinologist (not mine) came into Emergency and introduced herself. I had no idea what an endocrinologist was. She told us a diabetes educator would be coming down to take me to the hospital’s “Diabetes Day Care”. Ah… so I’m diabetic?

Once I found out I had type 1, I was told there is no cure, but there are remarkable advancements being made in treatment and technology. I’m also pretty sure the cure in ten years was mentioned as a possibility. Most importantly I was told I could live a normal life. I agree with this, but it’s a new normal.

A few weeks afterwards I was told that I “definitely have type 1” after the antibodies test. This was the trigger for my denial. What did they mean? There was a question about it? They can get that wrong? The educators had no idea that one phrase set off a conviction that my diagnosis would change to something “better” in time.

Frank: Wow, such different experiences. I wasn’t “all there” the first 24 hours of having diabetes. I’m not sure how I would have reacted if I had to start learning about diabetes that day.

Bec: I think whilst my sugar was insanely high my ketones were actually not horrific (3.6). I was lucky in that sense. So I was pretty good to go once they injected me with insulin. I can’t imagine NOT learning about it on the first day. I was an information addict!

The second half of this T1 Talk follows on Bec’s blog. We’ll delve into how we each handled type 1 in the initial time after our diagnosis, and some of the initial challenges that we each faced. Head on over to Bec’s blog to read the second half of our conversation here.

P.S. Thanks for floating this idea, Bec, and for being an awesome co-host and friend.

I’m sure I picked up more somewhere in this blog…but mostly I just found out that you both like Good Charlotte and I’m super excited right now and I feel like you need to do a 2talk topic on this alone. ‘Hold On’ was my diagnosis song.